In Honor of Caregivers

After my policy class this week, I decided to write about a project I coordinated many years ago to address elder abuse. After reading the first draft, I realized that it was missing important details about the challenges caregivers face. That meant I had to face my dreaded file cabinets!

As a child who loved not only to read, but re-read, it was sometimes excruciating to live in a house that had very few books. Although I discovered the public library, I never wanted to return the books I borrowed, resulting in overdue notices and fines that were so embarrassing. I learned to avoid the library if at all possible. As an adult, I started buying my own books, and as a student and professional, I collected copies of every article I read and every handout I gathered from workshops. The number of bookcases and file cabinets I needed grew each year. My file cabinets have taught me an important fact about myself. I am a piler, not a filer. On the days I am determined to organize papers, I come up with logical ways to sort and label. But when I am working on something and need just the right information, I am never able to remember the logic! If the articles are piled, I have little problem remembering which pile it might be in – because I have had to look through every pile hundreds of times to find things. But once they disappear into closed drawers in neatly labeled file folders, I become paralyzed with indecision. “How did I categorize this article in my all-too-fleeting moment of analytic clarity?”

Photo Credit: The messy process of looking for details

I have learned to avoid my file cabinets as assiduously as I avoid libraries. But I have kept stuffing new things in them – there are now 5 of them with extra file drawers in 2 desks. But I haven’t left them behind as I moved from state to state – I might desperately need something that is in them someday! I really did intend to clean them out before my last move, but I only had 3 weeks to get ready and sorting files was just not a priority.

Adding details meant I needed to face my file cabinets. The only way I could ethically describe details from a project so long ago would be to overcome the resistance I feel when I even walk into the room where they are arranged and overcome the dread of opening the drawers. But I did face the challenge and actually made an important discovery not only about the project details, but also about myself as a much younger program developer and person. Even then I really did “walk the talk” of community-driven program development and egalitarian partnerships. Now I think I can tell the “real” story …

***

Many years ago, I made the decision to leave a well-paying job as a planning and policy analyst for a state government to pursue advanced education and the opportunity to keep learning. In part, my decision was based on the outcome of a recent gubernatorial election. A job that had once made it possible to advocate for improvements for elder services shifted to constant surveillance of every conversation I had with constituents and written justification for every exchange with legislators who requested information. It also shifted from developing innovative new programs to defending programs that were important for elders’ survival and well-being. And in part, the decision was because bureaucracies are stifling places to work even in the best of times. The political appointees who set the agenda for executive branch activities rarely have the power to make many changes that actually improve peoples’ lives within or outside the organization. They can, however, easily make it worse.

To help pay my tuition, I decided to take on a part time job coordinating a federal research and training project to develop and test an intervention to address elder abuse, The Male Caregiver Training Project. The project, conceptualized by a professor and a graduate student, was intended to reduce elder abuse by targeting men who were providing care for older relatives – parents, wives, siblings, or other relations. Although men were less likely to be family caregivers (about 25% of family caregivers at the time), they were more likely to be reported as perpetrators of elder abuse (about 66% of reported perpetrators were men). The assumption of the grant writers was that men who were at risk of abusing elders would voluntarily agree to attend eight, two-hour “training” sessions that were based on behavior modification techniques. The “trainers” would be social work graduate students under the direction of the professor, and the results would be measured to determine the effectiveness using pretest and post-test self-reports. The student who was going to coordinate the project left just as the funding was awarded, so I was asked if I would be willing to coordinate the project.

Of course, I didn’t know all of these details until after I accepted the position and read the grant. As soon as I did, I was amazed that such a proposal had been funded and set out to conceptualize something that might make a difference in the real world. What did I know about being a male caregiver? Really, not much. The only way to learn more was to talk to men who were caring for relatives. I also needed to meet with key staff in the two pilot counties to build trust and partnerships. And the best way to build authentic partnerships was to change who led the sessions. What would university students know about the communities and resources for caregivers? Community staff already had contacts, credibility, and knowledge. Why not involve them not only as leaders of sessions, but also as partners in designing what the intervention would actually involve? And if the intervention was successful, wouldn’t it make more sense for community staff to have a vested interest in seeing the sessions continue after federal grant dollars ended? I called the federal project manager to present my suggestions, and he became excited by the possibilities.

Photo Credit: Artwork by Caren Caraway for Tools of the Trade for Men Who Care

I met with the directors of human services in both counties and found a key staff person in each who agreed to work with me. They helped me find men who were willing to talk with me about their experiences. The men I met with all had so much to teach others about tenacity and compassion. They also had a great deal to teach me about the types of support that would make their lives as caregivers easier.

The stories I heard were a testament to the best people can be. Six of the seven men who agreed to meet with me were, or had been, caregivers for their wives and were themselves in their 70s or 80s. One was a primary caregiver for his father in his 80s who was experiencing mobility and self-care challenges. A few were understandably guarded in their comments, while others saw the interview as an opportunity to share challenges, sorrow, and struggles with anyone who was willing to listen and care. Alzheimer’s and dementia were the reasons men were caring for their wives. They spoke, often tearfully, about the loss not only of someone they loved to a disease that erased memories and made them strangers, but also about the loss of their closest friend and confidant. They saw it as their responsibility to provide care, often at great personal cost as they dealt with their own physical limitations and financial challenges. Most importantly, they all felt alone. There was no one to talk to about the conflicting emotions they faced. There was no one who could share the physical burden of doing all the cooking, cleaning, shopping, and being on call 24 hours a day. They did the best they could as caregivers because they cared, and they did it alone because they didn’t know anyone they could ask for help or information.

So I summarized the findings, and with the help of my partners in each county, held a general planning meeting in each county that involved all of the key agency staff who dealt with elder issues and services. The purpose was to identify a team in each county that was willing to help develop and present the sessions. I spent a sleepless night before the first community meeting. Yes, I had these powerful interview summaries, and based on that, a suggested list of topics. But we couldn’t call this the Male Caregiver Training Project! Training is something that is done to horses, not that I recommend this approach for horses, but it certainly shouldn’t be how we work with people. As I was taking my morning shower before the meeting, I had an epiphany – we should call the sessions Tools of the Trade for Men Who Care. It highlighted the fundamental strength of the men who shared their stories, and reflected the suggestions they had for ways to help.

Staff in both counties identified resources that could serve as tools and resources to help caregivers. We all learned a great deal from the first workshop session in each county. We thought it would be difficult for men to share emotions, so we began with more informational topics. Yet during the first session in the first county, the men who participated shocked us with their willingness to share the depth of their distress – some spoke of contemplating suicide and murder – so we added crises counselors to the workshop teams. After testing and revising the intervention, six more counties tested the approach. More than 60 men participated in all during the project. Ten years after the grant ended, most of the counties were still conducting sessions, not only for men who were caring for relatives, but also for women. It spread to other counties and other states and eventually was nominated for a national award.

What made the experience rewarding for me was not public recognition. It was the opportunity to meet people, caregivers and staff who cared deeply enough about others to make so many personal sacrifices, and the honor of hearing their stories and working side-by-side to create an intervention that succeeded in improving some peoples’ lives. Among those I met was a reporter for a local paper who captured the essence of the challenges of caregivers and the importance of providing resources and opportunities for sharing.

…For better, for worse. For richer, for poorer. In sickness and in health. To love and to cherish, till death us do part.

When Jacob and Martha exchanged wedding vows 45 years ago, he was an Army private and she was a schoolteacher. “She was a lovely little gal,” he said as he pulled out a black and white photograph – now yellowed from age—of their wedding day from a manila envelope. “Wasn’t she something?” he asked, speaking more to himself than to a recent visitor….

Like many couples, Jacob and Martha, not their real names, worked for the day they could retire and spend their days growing old together. Today, they are in their 80s, but their dream of carefree retirement is tarnished. Martha has Alzheimer’s disease…. She is easily confused and requires 24-hour-a-day care. Jacob provided that care. Despite his own failing health, he dresses, bathes and feeds his wife. He cooks, cleans the house, does the laundry and orders groceries to be delivered. He is with his wife all the time, declining offers of respite care because, he says, “it upsets her,” when he is gone. Her illness dominates his life….

Jacob was one of the six men who attended the first [Tools of the Trade] workshop series offered last fall…. “It’s was kind of nice getting out,” Jacob said. “The workshop was a very good thing for me. It helped me realize that I’m not alone. I had a chance to talk with others who are in similar situations.”

I didn’t realize until many years later that I would need to know what I learned from caregivers during this project. I remember when my mother first realized something was happening to her. I went to pick her up because she had driven to visit my bother and could not remember how to get home. On the ride home she said, “I don’t know what is happening to me. I can’t remember things. I am so humiliated. I don’t want people to see me this way.” It broke my heart to know that this gentle woman who outlived her husband and survived years of abuse always wishing for a chance to enjoy life would never have that opportunity. At least, I thought, the bad memories will disappear as well.

Dealing with file cabinets has led me down memory lane with memories that are both grateful and sad. I think I will quickly find a place to stuff the project folders back into drawers and wait for the next polar vortex before opening them again. Yet I am grateful that I remembered how many kind and loving people I have met in my travels. I am sharing these memories to say miigwetch (thank you in Ojibwe) to the caregivers of the world and to those who support them.

Post navigation

12 thoughts on “In Honor of Caregivers”

Delightful and heartwarming, appreciate your humor on the “piles vs. files” orientation in the daunting task of retrieving information. So glad you did retrieve the details to thread into this wonderful story on community development and caregiving!

Carol, Glad to see you mixing your humor in with your very emotional stories. Those men were so fortunate to have the opportunity to share there feelings of helplessness with you and each other. Losing someone you love through dementia or Alzheimers has to be the hardest. I have gone to a dementia ward of a care home every week now for 16 years and I have seen how heartbreaking it is on both sides.

Thank you for your lovely comments, Bernadette, and for sharing the fact that you visit a dementia unit every week. It is heartbreaking – it was for the men we worker with on this project. And yes, humor sometimes helps.

And thank you for hosting Senior Salon. It’s quite a hit! I also imagine it’s a lot of work, too.